Autism program impresses Iowa legislators

Sidney Trees didn't realize he was involved in a multimillion-dollar push to help Iowa children with autism.

All the 8-year-old knew at that moment was that a woman had turned her face away when he started chattering at her about a toy train set.

The woman, Clive therapist Kara Jorgensen, was trying to correct the fidgety boy's habit of spewing out his thoughts without starting a conversation properly. When she turned away, he hesitated, looking perplexed. Then she tapped her own shoulder and made a suggestion.

"Say, 'Hey, Kara,' " she instructed, still looking away. Sidney understood immediately and did just that.

After swinging back to face him and smiling, Jorgensen rewarded Sidney by listening enthusiastically and playing trains with him.

The simple interaction — cheerful reinforcement of a seemingly normal behavior — is significant for families of autistic children like Sidney. The method, known as Applied Behavior Analysis, has shown such promise that Iowa legislators are pouring nearly $5 million into it.

The money, approved in 2013, started becoming available this past April. Five families are enrolled so far, but that number is expected to jump.

Autism is believed to affect more than 1 percent of American children. In severe cases, children lack any speech ability and have frequent, physical outbursts. In less severe cases, children may speak well but have difficulty interacting with other people. Most experts believe the main causes for the developmental disability are genetic, although environmental factors could play a role.

Applied Behavior Analysis participants spend hours with therapists, who encourage any progress in speech and social skills and ignore disruptive behaviors unless they become dangerous. Over months or years, proponents say, most students increase their ability to function well in school, make friends and eventually work at regular jobs.

Therapy expensive

Most private insurance plans are reluctant to cover the therapy, which can cost more then $30,000 per year. Iowa's Medicaid program has long covered it for disadvantaged children or those with severe intellectual disabilities. But until recently, the state offered no help for middle-class autistic children with average intelligence.

Legislators almost never earmark millions of dollars for a specific treatment for any illness or disorder. Rep. Dave Heaton, who spearheaded the proposal to make an exception, said the selling point was the prospect of helping autistic children get on track.

"If these kids don't move toward living somewhat normal lives, when they become adults, they'll be under state care for the rest of their lives, and that's very, very expensive," he said.

Heaton, a Mount Pleasant Republican who oversees spending on human-service programs, said legislators considered requiring private health-insurers to pay for the therapy, but determined it would be a tough sell. The prospect of adding a special Medicaid program to pay for a range of autism therapies seemed too expensive, Heaton said.

Legislators instead decided to pay directly for Applied Behavior Analysis. "Of all the things that are out there, this has been the most successful approach," he said.

Many endorsements

Steve Muller, chief executive officer of the Altoona-based Homestead autism-treatment agency, said families of autistic children are deluged with theories on what causes the condition and what can cure it.

"In autism, there are any number of snake-oil salesmen who are only too happy to part families with their money," he said.

Unlike many other treatments, Applied Behavior Analysis has been exhaustively studied and accepted by mainstream experts, Muller said. Its endorsers include the American Academy of Pediatrics and the U.S. surgeon general. Its success is partly due to how sustained and meticulous it is, Muller said.

Muller's agency provides the therapy that Sidney Trees has been receiving for the past three months, paid for by the state. His mother, Stacy Trees of Granger, said the family could never have afforded the $36,000 annual bill.

"It was like the heavens opened up, and God smiled down and said, 'You've been waiting long enough,' " she said of the state program.

Sidney goes to therapy five days a week, for 2½ hour sessions. The therapy is expected to continue for up to two years.

Stacy Trees has scaled back to part-time in her job as a school aide so she can take her son to Clive every weekday. She said she could tell when Sidney was a baby that something was wrong.

"We called him Solemn Sid, because he never smiled. He always looked worried," she said.

He avoided eye contact with others. As soon as he could walk, he'd zip away from her and into the street if she wasn't right with him. Even at 4, his speech was barely understandable, and he'd pitch fits that lasted an hour or more. "He would push and hit and scream," Trees said. "He was a great screamer."

Many people mistakenly believe autistic children lack interest in other people, Trees said. Her son wants to interact but doesn't understand how, she said. That frustrates him, which leads to tantrums. Underneath, she said, is a smart, sweet boy.

"You see that little light, and you know it's in there," she said, choking up. "But unless somebody feeds it oxygen, that little flame will go out."

Her goals include seeing her son receive invitations to other kids' birthday parties, which rarely happens now. She hopes he'll eventually become an independent, productive adult. Maybe, he'll use his intense interest in building things to become an engineer or an architect, she said.

Setbacks still occur

Applied Behavior Analysis is expensive because it is so intense. Each child has a specially trained therapist focusing on him or her throughout every session. The therapist carefully tracks every activity and interaction and praises any positive action.

On a recent afternoon, Sidney asked another boy if he wanted a turn during a board game. The therapist said, "Good asking, Sidney!"

As a staffer prepared to take her turn, she said, "Sidney, wish me luck." He replied, "OK," then looked away. His therapist touched his arm, pointed at the staffer and gently reminded him, "Say good …"

Sidney immediately remembered: "Good luck!" he said.

"Thanks, Sidney!" the staffer replied.

Such interactions are constant during every activity.

Successes are measured in tiny increments, and they're often balanced by setbacks — like a recent one when Sidney acted out his frustration. He'd asked another boy to work on a painting project, but the other boy didn't want to paint right then. Sidney crawled under a table before bolting into a hallway, kicking and slapping a door and yelling at the people in the next room.

Staff members tried to usher him into an empty room to calm down, but he was having none of it. At one point, five staff members spent about 15 minutes blocking his way with their bodies and a large, fabric-covered panel. They ignored his disruptive behavior, and when he quieted for a few seconds, clinic supervisor Leah Miljkovic told him, "I like the way you're keeping a calm body."

When he started kicking the door again, the staff stood silently.

Sidney eventually settled down, went into a room and started a new activity with his therapist. The praise and persistent guidance resumed. At home and at school, his parents and teachers will reinforce the lessons. And over months and years, his therapists say, he should be much better.

"It's not an overnight cure, as much as we'd love it to be one," Miljkovic said.